The I may write more on this at a later date, but for now, I’m republishing something I wrote elsewhere on the Internet back in 2013.
These words and thoughts have consequences, especially considering the confirmation of Betsy DeVos and Rubio’s hand in that.
Again, more on that at a later date.
I saw that a few other people had included their form responses, so I thought I’d include mine.
Dear <my name>,
Thank you for taking the time to contact me about autism awareness, research, and education. I understand this is an important issue impacting many people in our country, and I appreciate hearing your thoughts about ways to help those with disorders along the autism spectrum.
This completely ignored the fact that I actually explained that I AM AUTISTIC AND SO ARE MY KIDS, you know, so I’m not just this bystander concerned about “ways to help those with disorders along the autism spectrum”. Also, how clunky is that phrase in quotes? Good Lord.
As you know, researchers and medical professionals across our nation are committed to finding a cure for autism, and creating ways to help those with autism spectrum disorders control and manage symptoms through medications as well as changes in their lifestyles. The federal government has historically funded opportunities for biomedical research on autism through the National Institute of Mental Health at the National Institutes of Health (NIH), as well as numerous other institutes and health centers, and through grant opportunities aimed at autism research, education, awareness, and support services.
What the everloving fuck. So I write to you explaining that I don’t want to be cured, that I don’t want to be some horrific entity that you should want to eradicate or cure, and the first thing you talk about is how committed you are to finding a cure? Well alrighty then.
I mean, many of us have conditions RELATED to our autism that can be helped by medication, so that’s valid. I want all of us to have access to medication and to health care. But it sounds like “medication fixes autism” to me and I don’t think that’s even close to the case. I know that there are parents who put their kids on so much medication that the kid has no choice but to suppress the urge to stim and to sit quietly, but that’s not natural. Not when you’re autistic.And it’s very often harmful not only now, but later in life.
“Lifestyle changes” sounds a lot like “therapy to make you normal”. Because in most cases, that’s what is happening.
On May 26, 2011, Senator Robert Menendez (D-NJ) introduced the Combating Autism Reauthorization Act (S. 1094) in the U.S. Senate. This legislation would amend the Public Health Service Act to combat autism through research, screening, intervention, and education.
Interesting that three out of four of those really sounds like it’s try to fix or eliminate people like me, isn’t it? Research into what? Ways to target autism before birth? Through genetic screenings? That’s what the screening part talks about, I believe, unless we’re talking about the M-CHAT, which is a test given to diagnose an autistic person (most often a child). Intervention, ah, again, so we can pretend to be normal, and be bad version of ourselves, instead of you know, just being the best autistic people we could be. Now education? That’s something I could get behind. Educating professionals, including doctors, teachers, mental health professionals, etc etc etc, about what it’s like to be autisitc, and educating the community so there’s no longer a fear of autism? That I’d get behind 100%. But since this is part of the COMBATING AUTISM ACT as if we’re in some fucking war against people like me, well, I’m going to guess that it doesn’t have anything to do with anything but fearmongering, yet again.
Identical legislation has been introduced in the U.S. House of Representatives (H.R. 2005) by Congressman Christopher Smith (R-NJ). Since this legislation will ensure the continued success of autism research and targeted programs, I officially cosponsored the Senate version of the Combating Autism Reauthorization Act. The House-introduced version of the Combating Autism Reauthorization Act (H.R. 2005) was passed in the U.S. House of Representatives on September 20 and in the U.S. Senate on September 26, and the Combating Autism Reauthorization Act was signed into law by President Obama on September 30, 2011.
Federal funding for the NIH is currently appropriated by the Consolidated Appropriations Act, 2014 (H.R. 3547), which funds the federal government until September 30, 2014, and was passed by Congress on January 16. I could not support this trillion-dollar spending bill because it again postponed any significant action on pro-growth spending reforms to address our nation’s debt crisis.
I will continue to keep your thoughts regarding autism awareness, research, federal funding and education in mind during the 113th Congress. Again, thank you for contacting me about this matter, and I welcome any thoughts or input you wish to share in the future.
United States Senator
You didn’t listen, sir. You didn’t listen at all.
Yesterday, Disability Scoop published an article stating that Autism Speaks has discontinued its use of the word “cure” in its rhetoric.
Previously, Autism Speaks spoke of unifying the autism community to address what it called an “urgent global health crisis.”
“We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism. We strive to raise public awareness about autism and its effects on individuals, families and society: and we work to bring hope to all who deal with the hardships of this disorder,” the old statement indicated.
Well, that’s good, right? It’s good to not be talking so much about a cure anymore, right?
The new version, which the nonprofit says has been in the works since at least late last year, takes a decidedly different tack.
“Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions,” reads the update. “Autism Speaks enhances lives today and is accelerating a spectrum of solutions for tomorrow.”
Not only does it sound like a lot of nice words couched in nice language that don’t actually mean a thing, but it’s very parent focused (still) and doesn’t actually seem to help actual autistics. Oh, sure, maybe we’re not being called a national health crisis anymore, so I guess in that respect, it’s a small step forward (more like a reluctant shuffle, a tiptoe). They’re using the language of the neurodiversity movement in order to become more relevant, I suppose.
But Autism Speaks hasn’t done the basic duty of any organization who has continually royally screwed up.
- They haven’t apologized for plagiarizing an autistic activist’s work.
- They haven’t apologized for the atrocity that was “I Am Autism”
- They haven’t apologized for, as part of Autism Everyday, a new promotional video, for a member of their board talking about committing a murder/suicide on camera in front of her autistic child. Said member of the board then split off from Autism Speaks to form the Autism Science Foundation.
- They haven’t apologized for giving the Judge Rotenberg Center a table at their walks, a place that uses electric shocks on autistic people and has been condemned by the UN.
- They haven’t apologized for treating our parents as heroes and saints for the basic minimum duty of caring for us.
- They haven’t apologized for the abuse that they’ve hurled at autistic activists that dared oppose them on their webpage and Facebook pages.
- They haven’t apologized for the many times in which they pretended like autistic activists don’t exist. Notable examples are mostly on Twitter, where they created multiple tags for different events (#MSSNG and #AutismSpeaks10 , for example) for the express purpose of celebrating parents and professionals and how they’ve benefited from the existence of Autism Speaks. Autistic activists fought back, used the tags, and they ignored us and changed the tag they were using.
So I’m waiting. For apologies, for acknowledgments. Maybe they’re capable of changing, but I’m highly doubtful, and I don’t in any way think that this is anything but talk with no action. I also think that the proper response to criticisms is to start over entirely, not to ignore autistic activists’ criticisms and just change the words. That doesn’t mean anything.
In addition, “solutions” sounds a whole lot more like eugenics than “cure” ever did.
Vaccines don’t cause autism, that’s true, but what’s the underlying concern about autism. Why is it something to be afraid of?
It wasn’t until I was driving home from class one day and was listening to C-SPAN radio. I was in my mid-20s and living in Washington, DC. This would seem weird anywhere else in America, but in DC it’s perfectly normal. The panel discussion being broadcast was teens and adults with autism and how federal funding could better support them. As the show closed, the moderator asked if anyone on the panel felt a vaccine had caused their autism.
One teen panelist spoke up, “no, but it hurts that you would ask that question.”
The moderator’s tone softened, he apologized and asked why. I’m going to paraphrase the boy’s response because it has been several years and for the life of me I have not been able to find a transcript of this event anywhere, which has driven me to madness. If anyone from C-SPAN reads this and knows the talk I’m referring to, please send me a transcript! The panelist’s response was incredibly moving and I wish I could give him credit for it and do his response justice.
As I recall his response was, “because it makes me feel like I’m damaged or broken, when I’m not. I was born this way. My brain just works differently than most other people’s. When people talk about vaccines and autism it makes me feel like I’m not a person but a ‘bad result.’ It reminds me that no one wants a kid like me and parents will risk their kid’s lives and everyone else’s just to make sure their kid doesn’t turn out like me.”
So one thing you should know about me as an Autistic person, and this might apply to others, but I don’t know that it’s totally widespread among the Autistic population, is that I am pretty tied to my routines. They’re essential to how I function in the workplace, and they’re essential to how I function at home (the latter helps my kids, too – knowing what to expect on a day to day basis is important to them, too). I don’t do well when they’re interrupted.
I work a really good job for me. I’m the cook at a local preschool (that provides childcare and education to kids from 6 weeks old to 5 years old). It is a far cry from my last job, which was very social intensive, and could vary quite a bit. There were ways of doing things, but if something came up (like a bus full of high school athletes pulled into our parking lot, for example), we had to roll with the punches, as it were. But now, I spend a lot of time in my own space away from people, and a lot of my work is solitary. I’m very set in my routines. I’ve been there for just over two months and I have my own way of doing things and in my own order.
But as I cannot stay for 10 hours a day, and as we have an inspection coming up soon, they sent me someone to help with the order today, and to help go through what I need to focus on for the inspection.
This is good! But this is also bad.
It’s good because yes, I need the help in order to get everything in order, because this is the first corporate inspection I’ve had, and I need to know what to expect.
It’s bad because my brain is going “holy crap I don’t know what to do here because I have this way of doing things and now you’re moving stuff around and what if I can’t find things? And ack, why are you moving that around? It’s been there since the first day I worked here, and why are you doing that?”
I’m grateful for the help, I am. I am just having such a hard time getting my brain to cooperate and believe that this is 100% a good thing.
Next time, I wish I had some notice. Or I wish she would have come to me when it was spring break (like I had asked) when I could have stayed for longer because I had paid for childcare for the entire week, from 6am-630pm if I had wanted to stay that long.
But this interrupting me at 9:45 am, and again at 1pm, and moving things around and now I don’t have places for things I did have places for before? I don’t know. I’m frustrated.
And it’s easy to go “@#$%# neurotypicals!”
But I know it’s not her fault. It’s not even the office’s fault. It’s just that I need to be more explicit about accommodations and what I need. It means that I need to say “you need to write down what you want me to do with these things” instead of them sending someone in to help.
Tomorrow is another day. The order is put away, so hopefully she’ll just have some notes and I’ll get everything in order.
The world will not end because today, my routine was interrupted. I will adapt, and I’ve told myself the truth – “you’ve dealt with worse.”
Today is World Autism Day, and for us Autistic people, it’s Autism Acceptance Day. That means that many of us are using hashtags like #redinstead (which used to be #walkinred – I used both) and #toneitdowntaupe.
[image description: a photograph feature a person wearing a pair of red Converse-like shoes and a pair of blue jeans. A tan patterned rug is shown underneath the person’s feet]
It’s been about four years since I first started blogging about autism, and I’ve noticed some interesting things.
Facebook has this app where it will show you what you were doing or posting on the same day a year, two years, etc. ago. It’s sometimes fun to go back and see what you were doing on those days. It’s sometimes heartbreaking when you see photos of people who aren’t in your life anymore. It’s sometimes interesting to see how far you’ve come.
The past four years, my timeline has been filled with posts from Tone it Down Taupe and Walk in Red. I have some fantastic activist friends who have shared a bunch of things with me, and whose posts I have shared on my page.
But I didn’t always know what I know now. I’ve had Facebook for much longer than four years. So looking back on some of those days is distressing. One year, I lit it up blue. I don’t think I knew back then that it was to do with Autism Speaks. I definitely knew by that time that Autism Speaks was no good, but I didn’t realize that Light it Up Blue was basically supporting Autism Speaks.
I’ve learned a lot since then, thanks to a lot of reading (I was always good at that) and some patient people who got me to see that “uh, no, this is not quite as good as you think it is, and here’s why”.
It’s part of why I’ve begun in the past year or so to at least attempt to gently, kindly educate when I can, when it is possible and it’s clear the person is at least trying . I’m not perfect. I sometimes lash out when people use really awful language to discuss things that are pretty much absolutes (like, YES! All autistic people deserve dignity and to not have their care needs blasted all over the internet by their parents and caretakers). I have certain triggers, and I’m sorry, but I have a hard time taking you seriously if you refuse to read the information I provided (or at least start a Google search on the topic and read a tiny bit before demanding that I educate you). But I am trying, a lot more than I was in the past.
I remember what it was like to be ignorant. When my daughter was diagnosed definitively at age 3, the first resource that the doctors pointed me to was Autism Speaks. I wrinkled my nose at some of what I read, and I decided that Google was a better idea, because I was not liking some of the language that I encountered. Comments about grief upon obtaining a diagnosis were so jarring to me because I knew something was different from the time my daughter was 14 months old. A diagnosis was confirmation of what I already knew to be true, not a surprise or a shock or something that was causing me grief What a foreign concept.
Luckily, I never got too far into Autism Speaks. I didn’t jump on the cure train, that’s for sure. I wanted my kids to have the best life possible, and I knew that began not with therapies to change who they were, but with educational tools to help them learn in the way that was most comfortable for them. Eventually, all of this acceptance and understanding and learning about my kids and how their brain worked made me realize that oh, I wasn’t so normal after all, and oh, they’re taking after me . That journey of self discovery is something I’ll talk about another time, but it began when I was 27 and ended definitively with my own diagnosis when I was 30, which was nearly five years ago. Once I realized that I was a lot more like my kids than I was like the neurotypical people I knew, autism stopped being this bogeyman and I realized that no, not all parents know their kids and their triggers as instinctively as I did.
For instance, I hated Walmart for all of its sensory obnoxiousness, and my kids did too. I figured this out fairly quickly and we did some online ordering, some shopping in other stores. I knew that the lights and the noise and smells bothered them, because they bothered me. I could see them react in the same way I was. I had just had 25+ years of being told that I was overreacting and finding ways of mitigating the pain of sensory overload, so I got us all out of there fairly quickly.
It still took a couple of years after figuring out that I might be Autistic for me to say that out loud, for me to identify that outside of my personal blog (not this one), and it still wasn’t until this year that I was fully confident of being “out” about being Autistic with everyone I encounter on a daily basis.
So having said that, I’m trying to be kind to those I meet. I’m trying to help form this bridge of knowledge between those whose kids have just been diagnosed and activists (both autistic and not) who have been in the trenches for decades.
April is a hard month for a lot of us. We can’t go outside without encountering something related to Autism Speaks and lighting it up blue. So please, be kind, think about what you’re posting and whether an Autistic person would be helped or hurt by it, and please at least start looking up information on a topic before you demand that an Autistic person educate you about it.
Please feel free to connect with me on my facebook page here. You can also message me there.
Content warning : Autism Speaks, filicide, propaganda, brief mention of rape and death threats
I realized not too long ago that it’s been four years since I wrote my first post about Autism Speaks. I have two major ones that exist, both of them available under the “pages” tool on my blog here. Feel free to read them if you have the time or the stomach to do so. It’s a lot, and though there’s quite a bit that needs to be updated (notably that there are now two autistic board members), most of the points still stand.
Those posts are rich in information, most of it fairly dry and straightforward. The point of those posts was to have something to go to when someone asked me “but why don’t you like Autism Speaks?”. The first ever post I made on the subject was on my tumblr blog four years ago, and it was in response to someone asking me exactly that question. After a week of the same question repeatedly (after the first ask had been buried under other posts), I decided to make it a post.
The research on that was harrowing. It was a lot to take in, it was difficult to read. I was committed to making it as detailed as possible and I tried my best to not impose too many biased and outlandish statements within it. I can’t say I was entirely successful, but the me of four years ago was far more intense about these sorts of things than the me of today.
And then I edited that post. And I edited it again. And I realized that I was adding so much to the post that I may as well make a second one. So the updated Autism Speaks post came into existence just two years ago.
I don’t think I have ever really talked about the impact of those posts on me, what it feels like to not only have them floating around the internet, but to have been linked in articles in major news outlets. Nor have I talked about the way that Autism Speaks makes me feel.
So this is what I’m doing now. This isn’t edited for clarity. It isn’t particularly newsworthy or perfectly constructed. But this is me.
I feel heartbroken. Every time I hear the words “epidemic” or “tragedy” or the words “until all the pieces fit” along with the imagery of a puzzle piece being forced into the wrong shape, it breaks my heart. It makes me think of all the times when well-meaning family and friends tried to make me be something I’m not. Less autistic, more neurotypical. Maybe even sometimes more straight (though that’s a different story in itself).
Every time a parent whose clothing is covered by puzzle pieces or autism “awareness” slogans tells me I don’t count because I can speak, even while I’m stuttering and turning red and unable to continue and they think they’ve won the fight…my heart breaks.
Every time an autistic activist receives a hateful comment, a rape or a death threat, it makes me want to scream.
Every time I read about places like the Judge Rotenberg Center, or posts about people who have been subject to 40+ hours of ABA therapy a week since they were two years old (or younger!), it makes me want to scream .
Every time I see Autism Speaks release yet another pile of steaming bullshit, whether it’s in the form of a celebrity benefit or those damn gold bunnies, or some ridiculous computer simulation of a person who avoid eye contact (as if that’s the absolute worst ever), I get angry.
I am a highly empathetic person. I know that word empathy is thrown around and used improperly and it’s difficult to pinpoint exactly what it means when you’re an autistic who has a lot of empathy. But I do, and I’m affected not just emotionally but physically by other people’s pain, and it hurts. Every time one of us hurts, I hurt.
And then I see the result of all this propaganda that Autism Speaks puts out, the flat out denial of our humanity. The fact that every time one of us is killed by our caretakers, that the number one comment will be about services, services, services. That it doesn’t matter that we are people deserving of love and respect and life . We are problems to be solved, and that can only happen through services. So many excuses, and yet so many of these parents had access to services, were filthy fucking rich, and they still killed their kids.
I know this – that the only time Autism Speaks has directly commented on a parent killing their autistic kid was the attempted murder of Issy Stapleton, and how Autism Speaks called it “an unfortunate incident” and refused to directly comment on Kelli Stapleton and how she tried to kill her autistic daughter. Is it because she was an autism mom blogger and well known in that community? I think so. I can’t prove that, but I have a pretty good instinct about it.
I am heartbroken about it all. I see every single parent that tries to explain these things to me as if I don’t know, as if I just don’t understand. See, because even though I am one of them (a parent of autistic kids), I’m not really one of them. I’m “other”. I know many people like me (autistic parent of autistic kids), but the “autism parents” like to think that we don’t exist.
I do understand. I understand the fears. I understand the frustration, especially if you’re a single parent. But I don’t understand how a person disrespects their child, takes away their autonomy again and again and again, refuses to explain to them that they’re even autistic, and makes them feel so very broken. I don’t understand parents who, instead of accepting their child’s neurology as who they are, spends time and money on Autism Speaks’ walks to “find a cure”. I don’t understand parents who go there with their children (both actual children and their adult offspring), who speak as though their kids aren’t even there or capable of understanding, and who talk over Autistic advocates who try to explain the problems with Autism Speaks.
I get it. It’s the first resource that doctors offer upon a diagnosis being confirmed. I get that. I know that I’m much more informed and open-minded than a lot of people. But when I read Autism Speaks’ “The First 100 days”, I felt sick to my stomach. These people were describing my child? How dare they! How dare they describe her with such foul words? How dare they dehumanize her?
Respect your kids. Respect yourself. And Boycott Autism Speaks.